Get involved with the EXPLORE study
EXPLORE – EXploring the alignment of values and Preferences for communication, care and decision-making regarding end-of-life issues in people with a haematoLOgical malignancy, and health caRE professionals.
The EXPLORE study is seeking your opinion on preparing for end of life.
In partnership with health care professionals and researchers and led by Dr Elise Button, Nurse Researcher, Royal Brisbane and Women’s Hospital and Queensland University of Technology – we are exploring the opinions of people with a blood cancer around end of life issues. Having this knowledge will improve the provision of care at all stages of a person’s illness.
Background of the EXPLORE study
Some people with a blood cancer can become very unwell, very quickly. They can also get better after becoming very unwell. It can be difficult for health care professionals to know when a person with a blood cancer will recover from being very unwell, or when they may be nearing the end of their life. This sometimes means that people with a blood cancer don’t get to have the opportunity to plan and prepare for death, have control, or participate in shared-decision making near the end of life. This may lead to end-of-life care that is not ideal for the patient and their family.
At present, there isn’t much information on how to address these issues. More research is needed regarding how and when to discuss prognosis and life-expectancy, palliative care, and how much people want to be involved in decision-making near the end of life.
The study has been approved by the research ethics committee at the Royal Brisbane and Women’s Hospital (HREC/2019/QRBW/56620).
To assist with this study you will need to be:
• diagnosed with a blood cancer
• over 18 years of age
• willing to reflect on what would be important to you, if you were near the end of your life, in a short survey.
How you can help – the survey
A short, anonymous online survey will be asking people with a blood cancer about their:
• preferences for prognosis and life expectancy discussions
• preferences for involvement in decision-making near the end of life
• values relating to time and personal organisation matters
• values relating to care provided near the end of life.
A similar survey will be conducted with doctors and nurses working in haematology, asking them what they think patients want in the same scenarios. The results of the two surveys will be compared to see if there are differences.
These are sensitive topics to bring up in health care and in research and you should consider carefully if you feel comfortable completing the survey.
The questions are not meant to reflect any particular individual’s situation and participation is voluntary. There are 35 questions (12 about who you are, and 22 about your values and preferences) and it should take between five and 15 minutes to complete.
Should you decide to take part in the survey and feel distressed or concerned by the topics raised, feel free to stop at any time. You can contact the Leukaemia Foundation on 1800 620 420 to discuss any issues.
Developed by the Leukaemia Foundation in consultation with people living with a blood cancer, Leukaemia Foundation support staff, haematology nursing staff and/or Australian clinical haematologists. This content is provided for information purposes only and we urge you to always seek advice from a registered health care professional for diagnosis, treatment and answers to your medical questions, including the suitability of a particular therapy, service, product or treatment in your circumstances. The Leukaemia Foundation shall not bear any liability for any person relying on the materials contained on this website.